How I Found My Doctor

Obtaining an accurate diagnosis is the first and most important step to acquiring the best outcome in a patient’s health care journey.  For patients with chronic or complex conditions, obtaining accurate diagnoses can be a years-long process that often brings on added stress, financial burdens, the frustration of unanswered questions and even hopelessness.

After more than 25 years of suffering severe pain and dealing with a myriad of symptoms that seemed to befuddle every clinician along the way, I have been incredibly fortunate to have found Dr. Forest Tennant.  I call him my “Earth Angel” or “Saint Forest” for ending both my hopelessness and the mystery of what I was dealing with.  He has dedicated his life and career to helping others; and his compassion, knowledge and understanding of intractable pain are paramount.

My personal health journey began at the age of 10 when my father woke me for school and I collapsed when I tried to get out of bed. I looked at my legs and saw swollen knee and ankle joints that were red and warm to the touch. My elbows, wrists and hands were the same.  I had been sick with strep throat a week or two prior and because it went untreated, it led to rheumatic fever.

For about two months, I was treated with aspirin and penicillin (a regiment that was supposed to be taken until the age of 21, or possibly for life).  Bloodwork and EKGs were taken every two weeks to monitor my condition.  Once I was able to return to school, I thought that chapter of medical complications was closed.  I never imagined it would lead to life-long complications.

By the time I was 16, I was experiencing pain that was severe and constant throughout my entire spine. The muscle spasms and sharp, shooting pain would stop me in my tracks. It was interrupting my sleep, dictating the activities that I could participate in and even hindering my ability to focus in school because I couldn’t even sit without pain.

Unbeknownst to me in the early years of my search for help, traditional treatments for back pain were things that I should have avoided-such as chiropractic treatment.  I believed that the increased pain that it caused was just part of the process and that the adjustments were “fixing” me.

Visits to practitioners became predictable: time after time, I was told that I was “too young to have that much pain” and was oftentimes dismissed as a hypochondriac and/or drug seeker.  That was far from the truth.  I did not want to take medications, particularly if they were going to be life-long.  The two months of aspirin and penicillin was enough!

I made an appointment with pain management-a specialty I hadn’t even known existed until I started working in healthcare myself. In order to avoid medication, I opted for steroid injections.  I was hopeful that injecting steroid medication would get to the source of my pain and be the solution.  These were done every two weeks for the first six months of pain management. Over the years, I have had over 100 spinal injections at multiple levels.  Each one was incredibly painful and I never felt any relief, but the doctors insisted on continuing to do them.

Still searching for relief and answers, I eventually saw a neurosurgeon and underwent lumbar surgery at the age of 26.  I thought for sure this would be the solution.  It was not. The surgery was the most horrific experience of my life (I now know it was because I had adhesive arachnoiditis (AA) and it wasn’t recognized).  My family will always remember it as “the time Ashley cleared an entire wing of the hospital” because I was unable to control my crying and screaming-for 36 long hours. The surgery caused my entire back to go into a severe spasm and it felt like I was cemented into the bed with acid flowing through my spine.

Over the years my symptoms worsened and expanded beyond the pain.  I continued my search for answers, but it didn’t seem like there were any to be had.  Was I a “medical mystery” patient?  No. I just hadn’t found the right doctor.  That would soon change-and it wasn’t with a doctor in my area.

After seeing news broadcasts about a pain rally that was held in my area, I began to connect with other pain patients online. Through those contacts, I heard about Dr. Forest Tennant.  He was a highly regarded physician across the nation who’d specialized in recognizing and diagnosing adhesive arachnoiditis. Adhesive arachnoiditis is an inflammatory disease of the spinal canal in which cauda equina nerve roots become attached by adhesions to the arachnoid-dural (meninges) covering of the spinal canal. There are four stages and the pain that it causes has been compared to metastatic bone cancer). They said he’d review my records and imaging at no cost and based on what I was describing, it could very well be AA.

I took their advice, gathered my records and most recent MRI discs, filled out the form…and let them sit for months. Looking back, I think I was afraid I’d once again be let down and left without answers. Eventually those items made it to a mailbox and to West Covina, California.

About two months later, I noticed an email from The Tennant Foundation in my inbox folder.  I thought for sure it was going to be from someone that worked for him, but it was from Doc himself.  He confirmed that I did, in fact, have adhesive arachnoiditis and I cried tears of validation and appreciation (and couldn’t stop for two days!). All those years of being gaslit, doubted and searching for answers had built up and the emotions just kept flowing!

Since then, I have kept in touch with Dr. Tennant and other patients suffering from intractable pain and/or AA via Zoom meetings that he holds every Thursday (Doctoks).  Additionally, he has written books for both patients and providers, he regularly contributes to intractablepain.org and arachnoiditishope.com and continues to review records, oversee research and spread awareness and hope for people like me.

Thanks to the knowledge Dr. Tennant and the other physician advocates that participate in the Zoom meetings have given me, I have taken my health in to my own hands as much as possible.  I have been following a protocol of both prescription and nonprescription medications and supplements in hopes of slowing the progression of this awful disease.

Knowing and understanding your condition(s) is imperative.  Dr. Tennant has put so many puzzle pieces together for me-particularly how I ended up with AA-and it all goes back to rheumatic fever.

I will be forever grateful for Dr. Tennant’s dedication to patients, for that is what led to an accurate diagnosis for me.  If you are searching for answers as to what ails you, you must persist until you find your Earth Angel…and I hope you do.

Note: In order to assure the best possible outcome when searching for a diagnosis, we as patients, must provide our clinicians with as much pertinent information as possible. Keeping records of visits with any and all providers in a three ring binder or a folder can be helpful.  Requesting copies of imaging along with the reports is also a good idea. Most of all, we must be our own advocates.